Monday, January 24, 2011

New Night Gear

Awhile back, I referenced a variety of appointments that we were going to, and they all were close to one another. It seemed like that was all we did – go to appointments. N has been remarkably healthy, considering he has Down syndrome. His main area of concern has been his stomach, which I have mentioned. (He has a long history of reflux and was on 4 different meds as a one year old to avoid surgery for it. He only takes one thing as needed now.) I know that many of you go to appointments far more than we do, so I was thinking of you lately!

We did the endocrinologist (remember that annual thyroid tests at the pediatrician may not be giving the true picture!), 3 orthodontists and 2 oral surgeons, plus the sleep study neurologist (and first sleep study) all in about two and a half weeks. Strangely, the permanent ankylosed molar (unrelated to Down syndrome), is what is causing the most confusion. The one orthodontist at Children’s Hospital hemmed and hawed for about 45 minutes about what to do. He even left the room twice. (Was he going to look stuff up on the internet??) When I threw a suggestion into the ring for consideration, he immediately said, “Yes, that is what we’ll do,” and began writing a treatment plan. Now that's a scary thought! He’s not the one we are going with, but braces should be on in about two more weeks!

Because he does have significant sleep apnea, the poor guy went for his second sleep study to measure what his air pressure needs to be with the CPAP machine. Thankfully, his sweet dad was up for this again. More electrodes, more attachments, then the Darth Vader mask. The first line of the report reads: “We realize you had great difficulty getting to sleep in a new place with the mask on.” Understatement, I am sure! We went a few days ago for training in operating his very own CPAP, and he is learning to wear it. (I can NOT imagine!!)

He is dutiful and compliant, but I feel sorry for him. Someone said it is like getting used to new glasses—once you see the difference it makes, you will want to wear it. I don’t know . . . Could you sleep in this??

1 comment:

  1. Hello! thanks for visiting my blog.
    My Noah also has sleep apnea and we have had several sleep studies over the years. are next step is to get the c pap but now we have moved and have to find all new drs. sigh...